Plan needs to embrace Alzheimer's quality of life issues

In January 2011, President Obama signed into law the National Alzheimer's Project, or NAPA.

The plan set goals aimed at accelerating research, improving early diagnosis and coordinating care and treatment of the disease. Dr. Richard Hodes, director of the National Institute of Aging, recently presented a set of research milestones that will use be used to track progress toward NAPA's goals. The milestones will be part of an update that should be published later this month, so stay tuned.

There's no cure for Alzheimer's, Lewy body disease or other related dementias, but there are treatments. When we think of treatment, most of us probably imagine a pill. While there are drugs approved for Alzheimer's, they don't cure or stop the disease from progressing. At best, they may temporarily slow the worsening of symptoms for some.

We all applaud the efforts of NAPA and its primary focus toward better drug treatments. At the same time, any promising drug won't be available for persons already living with cognitive decline and may not be available in time for those who develop the disease in the next decade, or even two.

Future drug therapies may hold promise to further delay the onset of dementia and improve symptom management, but we can't be sure they will ever cure or eliminate the disease entirely.

There's another type of treatment available — non-pharmacological therapies, or personalized practices, or psychosocial approaches. Unlike drug treatments, these treatments have no side effects, cost little and have the potential to significantly enhance life and overall well-being for those living with the disease, as well as their caregivers.

We have a substantial amount of evidence-based data demonstrating that these non-pharmacological therapies (personalized approaches as I prefer to call them) reduce symptoms, positively impact behavioral and health outcomes, improve the day to day lives of people living with dementia and their support partners, delay institutionalization, can slow the rate of symptom progression, enhance preserved strengths and reduce the need for medication.

Non-pharmacological therapies include cognitive based interventions such as cognitive training and stimulation, psychosocial therapies such as reminiscence and social engagement, movement and exercise programs, sensory therapies such as music and aromatherapy, as well as appropriately designed environments. Person-centered training and programs that support family and caregivers are other examples.

Each approach represents a significant contribution to Alzheimer's treatment. Many of my friends and colleagues are working tirelessly to draw attention to these therapies and at the same time expand research to support their efficacy; ultimately making them more widely accepted, available and integrated into our communities.

With a disease that's here to stay for some time, our national efforts must ignite attention on improving the quality of life for those living with the disease and their families. This means a coordinated strategy that values, supports and encourages non-drug approaches and subsequent research with the same devotion as drug research.

At the end of the day, it's unlikely one drug or one therapy will be the magic bullet, but a combination of the right drug with the right personalized approaches. However, the most significant milestone in my mind will be one in which the stigma and fear surrounding dementia dissolve and our nation embraces the dignity and worth of every individual living with dementia. We'll see what the NAPA update has to say.

I enjoyed reading this post, Angela. I am glad that, more and more, we are recognizing the need to address the quality of life issue as well as continuing our quest for a medical cure/prevention. Five years ago my wife and I began writing about the benefits of appropriate activity and other alternative therapies for people with Alzheimer's. Now thousands of people each month, from all over the world, visit to read what we have to say. I am confident that many, if not most of these visitors have derived benefit from what they have found on our site. To have a life that is meaningful, productive and as enjoyable as possible is about all that any of us can expect, and appropriate alternative therapies is perhaps the best way to ensure that for people affected by dementia.

jOHN

July 4, 2013 3:46 a.m.

to Amy, your husband loss his man life, so he has a other life. This life is not the same before and he is not like a woman. I hope your husband has contact and connection to other men. So they speak to gether as man to man. The communication is between woman and man not the same. The words are other words, man words. So the aggressivity goes a little bit away. Also the medication have to be in balance, and he drink water, tea or any others enough. I wrote a book for this.I am a therapist and caregiver for a long time.

susangab

June 25, 2013 6:36 p.m.

To John, I understand just how you feel. My husband was officially diagnosed four years ago but I knew something was wrong for over six years prior to that. It took me that long to convinence him to talk to his doctor about his memory and aggression. He would come home from the doctor and tell me that he had asked the doctor and was told he was fine, no problem with his memory. He finally agreed to see my PM doctor to prove to me he was fine and shut me up. I had told my doctor prior and she knew what to ask. After he had the MRI and Pet Scan test, he was diagnosed with dementia. He has declined a lot since then and the years continue to get worse. Yes, I have plenty of 'help', the support groups, taking care of yourself, different medicine and etc. All is good BUT each person illness is different. You hear what helped them but don't think it will be the same for you. I have resigned that each day is going to be different and I just meet it the best I can, then forget all the things I might not do right. -Amy

Amy

June 25, 2013 12:55 p.m.

FYI. A typical American automobile weighs about 3700 lbs. NOT 4 tons. See AARP Apr/May issue.

Jack

June 22, 2013 4:25 p.m.

My husband was diagnosed with early onset over 5 years ago. The last year and 1/2 have escalated his cognitive skills and a fall and hip fracture in February, caused so many more issues. I agree with the comment that we need to be honest, there is truly nothing there now that can have a major impact on the health of the patient, the caregiver and our finances. Think about who will profit... because some will. Someone recently said it's the next &quot;plaque&quot; ... I agree and it is so painful for everyone who cares about the person who is suffering.

Kathy

June 21, 2013 4:15 a.m.

to John, this is a disease but not for years. The only key is, to do the things in the daily life with concentration. If your wife is knowing from this disease, she will do like the diagnose is. So she take her life in training for the brain. The training is to find her own words for the things. And than the brain cells are connected. It is input. And when she does all the things she can do in the daily life. This is output system. She have to find her own words. The words from a man is different to the woman words. I wrote a book Rediscover Recoverz, Practical Training. I am a therapist for a long time.

Anonymous

June 20, 2013 9:25 p.m.

John, I can feel your pain having experienced a similiar experience. Stay strong. Find a support group. You need someone to confide in. Try not to argue or explain your way out of it, It only makes it worse. Try to move ahead remembering, it is the disease, not your wife, lashing out

Ron

June 19, 2013 4:28 p.m.

I was diagnosed md last year. The doctor prescribed Namenda an a patch. I feel great most of the time. I know that these medicines won't take away the desease but it will help.

Lisa

June 19, 2013 10:01 a.m.

Today, my wife of 62 years was given a diagnosis of minor to moderate dementia. Our two children and I had struggled for a year or more to have this brief test done. I finally spoke to our GP two weeks ago about our concerns. He suggested that he do it on his next visit - today.
Helen quite readily responded to his questions, etc. He made the diagnosis quite quickly and presecribed medication. I shall pick it up tomorrow when I get one of my own.
Immediately after the doctor had left our seniors residence suit, my wife turned angrily on me. At the end of he outburst, she called me a cheater because I had gone behind her back and had not consulted her before soeaking to the doctor. My only rather weak response was to say that I felt I would be damned if I did and damned if I didn't.
The harrowing of this hell has just begun.

jOHN

June 17, 2013 4:15 p.m.

Not sure what to offer here...
having dealt with &quot;whatever it is&quot; for the last 7,8,9,10 years with my wife and having being left a single parent then with children 7,12,14 and now 15, 20, 22 and two grandchildren I've see it affect from cradle to the grave...so to speak
it robs, relentless, and 36/24 hours a day.
Maybe I am just tired and need a break which I am finally getting thanks to some assistance.
It is time as a people we say enough is enough and get more help for those on the front lines.
For me, well, I am sick to death of hearing all those complain about our goverment and those taking advantage ... how about where our goverment is helping and is doing more via programs and now this the NAPA.
I want to see more in the area of early onset and the children. The children are my passion.
Medications, coconut oil, vodoo, I have no idea... nohting works... it seems or Iam so stressed I can not deal with it and just do the best I can.
All in all it is the reality of insanity.
I've expressed concerns to some at the alz association but I am not sure they are &quot;listening.&quot; They may hear, but I dont think they are really listening.
What are other countries doing for their people with this disease?
How can those fighting the fight actually be heard at the NAPA level? Too many levels of &quot;higherups&quot; and not enough of those representing earlyonset.children. those in the trenches.that is what I found.
How many on the board of alz caregive

Joe b

June 14, 2013 2:03 p.m.

Fran, What the AXONA website says it does may be accomplished by adding coconut oil to your husbands diet. We include it in my mom's by using it to saute foods, on toast instead of butter, in baking, in smoothies, everywhere we can. It is very healthful, and available at health food stores and some groceries. The amount of coconut flavor depends on the brand. We buy organic to avoid pesticides. Studies have shown it can improve memory, and my mom is a shining example.

Janet

June 13, 2013 11:45 p.m.

Norm,Barbara and Allan...right on!! I have been a speech pathologist for 30 years. Several years of my experience includes cognitive therapy for those affected by Traumatic Brain Injury (ex: car wreck; gun shot), rehabiliation for stroke; maintaining quality of life and training caregivers for the Alzh population, and end of life care. My mother was one of four sisters affected by the disease. The info presented above is NOT new information and I have utilized the above techniques in my therapy plans, However I do understand that this is very new info to some folks. The best thing to do is to approach your local Alzh Association for guidance in particular areas of caregiving. My personal choice if I ever get Alzh...I want no medication to slow the progression. Medication to maintain my mood is fine. I think that this disease drains families of their sanity at times; it is a huge cost to families and the government for those who go on Medicaid. In 2010 when I took over my aunt's finances she had $380,000 in investments/accounts/etc. Just three years later, due to 24 hour care at home, she has $160,000.I have already contacted an elderlcare attorney to find out future options for the Medicaid hell that will approach us before we know it. These forums are great and Mayo Clinic is one of the top three sites I look at to get reliable information. However forums don't talk...I prefer live voices that is why I suggested the local Alzh Association in your area.
Good luck...

pam

June 13, 2013 7:29 p.m.

Governments should look into and act in providing day care programs for people with Alz Dx or &quot;by hiring companions to provide respite time&quot; for a carer who is a family member. What I have been doing everyday is providing my husband nutritious meals, keeping him busy and active, and exercising with him. However, doing all these with him and for him gets to be exhausting, as I also have to do housework and attend to the matter of generating income to pay for all expenses. A &quot;respite&quot;assistance would be very good for a day or two, just be able for me to regenerate my exhausted energies so I will be able to continue my caring for my husband. No matter how much &quot;word&quot; assistance and empathy are heaped on the carer by others who think they understand the care-giving situation, it is only the family carer who really knows how difficult and exhausting it is on all levels (emotional, mental and physical) to care for a spouse or a parent with Alz Dx. It takes love without boundaries to do this care-giving, but at times, this love is tested to exhaustion.

Paola

June 13, 2013 6:15 p.m.

Has anyone had any experience with a &quot;medical food&quot; called &quot;AXONA&quot;? It's a powder, mixed with milk and served like a shake. My husband has been taking it slightly more than a month, and I believe his condition has worsened rather than improved. We're told it takes two months to see any results, but I'm worried that it may be causing harm.

Fran

June 13, 2013 6:10 p.m.

jNFgTV

Fran

June 13, 2013 3:46 p.m.

I heartily agree with this blog post and have felt for a long time that not enough is being done to support current AD patients and their caregivers. As a 17 year caregiver for my mother with AD, I saw firsthand how much personalized therapy helped her - particularly music and aromatherapy. She also benefited from attending a day care that used social stimulation and activities appropriate to the level of functioning of those in attendance. I have seen almost miraculous responses of AD patients, even late stage, to music. The research is in progress to support the claims, but for those in the &quot;trenches&quot; trying to enhance their loved one's quality of life right now, a multifaceted approach, including as many personalized therapies as possible is an excellent way to proceed and should be supported by NAPA funding. Thank you so much for calling attention to this important issue!

Karen

June 13, 2013 3:13 p.m.

A small group home that operates as a family has been a good solution for us. Though we are moving into late stage now, the fact that there were meals and activities performed as a group helped my husband stay involved. The problem is that they are very expensive.

penney

June 13, 2013 2:06 p.m.

In my opinion AZ association does not emphasis enough the help folks need now. My wife and I have Cog. stuff, we do fine now, but when we need more help sure wish we thought AZ asoication would be there for more than finding cure.

Norm

June 13, 2013 11:21 a.m.

We need National Health Care for ALL...ASAP.

barbara

June 12, 2013 5:52 a.m.

Whereas some &quot;personalized approaches&quot; may be helpful to some people with Alzheimer's and some caregivers, we must be very careful not to &quot;oversell&quot; such approaches. Some zealous advocates of &quot;personalized approaches&quot; state that their cognitive stimulation programs or other alternative therapy measures will provide benefits when those claims are not supported by rigorous research. I've seen too many caregivers spending money on such programs for their spouses hoping to prevent further cognitive decline, when that money may have been much better spent on social model day care programs or by hiring companions to provide respite time! Drug manufacturers, as well as advocates of &quot;personal approach&quot; therapies, must be open and honest with caregivers and those with Alzheimer's by saying that no current treatment is effective in stopping the inevitable further decline of this neurodegenerative disease beyond a few months at best ... and even then only for some people.

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